“My first lesions appeared when I was 4 years old.”
The first signs were white fibrous lesions located inside the upper left eyelid. Renae’s parents treated her with drops and ointment while removing the lesions themselves with a Q-Tip. Unfortunately, it became an almost-daily ritual because the lesions kept coming back over night.
Renae’s eye was also extremally watery all the time because of a blocked tear duct. Her doctors performed surgery on the tear duct directly. The lesions appeared to resolve in time, and her doctor suspected that the lesions were caused by the blocked tear duct, as they never came back.
“Between the ages of 4 and 35, I did not get any other lesions. However, I went through many experiences that were considered abnormal compared to the general population.”
At 11 years old, Renae started her periods just like any girl undergoing puberty, but they were extremally heavy and painful compared to those of her friends. Every month she would often have to stay in bed for the entire week. A few years later her doctor prescribed birth control pills to lower her pain. This worked well as long as she stayed on the pill. In that period of time, she was also diagnosed with endometriosis, a painful disorder in which tissue that normally lines the inside of the uterus — the endometrium — grows outside the uterus.
“When I was younger, I underwent many surgeries followed by post-surgery episodes of healing complications.”
At the age of 12, Renae had her appendix removed and the procedure went smoothly, however she was unable to heal normally. Her managing physician did not have an explanation for the difficulty and delay with healing, and suggested it might be due to the fact that she is a redhead, and her skin and organs may be more sensitive.
At 18, Renae had kidney stones removed. The surgery was completed without complication, but her healing process was very slow. Renae developed abnormal mucus membranes in her ureter and it took 6 months before these healed and resolved.
At the age of 22, Renae required back surgery. This procedure left her with a six-inch incision. Again, her body was not able to repair the wound incision site in a normal process. The incision became severely infected, which slowed the healing process significantly. Renae required several courses of antibiotics over an extended period, and it took about six months before the infection was completely resolved and the incision healed.
“All those experiences were really hard, but I still believed in a brighter future. After getting married, I wanted to start a family…”
After getting married, Renae desperately wanted to start a family, but she was unable to conceive.
Renae’s fallopian tubes were not functional due to endometriosis. Renae tried in vitro fertilisation many times, but without success. The specialist managing Renae’s care did not understand the reason for the failure, as the IVF process was expected to work well.
She then turned to other options and adopted three beautiful children.
“At the age of 35, new lesions appeared. I didn’t make the connection with what happened to me as a child as the lesions were not located in the same area.”
This time, more than 30 years later, the lesions took the form of white fibrous tissue on her gum. Renae’s dentist referred her to an oral surgeon who removed the lesions without complication. The oral surgeon was not familiar with this type of abnormal fibrous or connective tissue in the gums. However, the specialist did not pursue it further as symptoms were kept under control.
“Today I can see that it was all connected to my low PLGD level, but not then.”
Two years ago, at the age of 48, Renae had pink eye on her right eye. She was prescribed a typical anti-bacterial eye ointment, but her condition only worsened.
Renae sought an exam with another healthcare provider who suspected it might be viral pink eye and would likely resolve on its own in 10 days. Unfortunately, Renae’s situation did not improve and lesions began growing on both her upper and lower lids.
Renae then consulted a retina specialist who treated her with drops and steroids while removing the lesions regularly, but they always came back. This Ophthalmologist had no idea what was causing multiple recurrences of lesions on her eye lids, so he referred Renae to another Ophthalmologist with experience in rare ocular conditions.
A biopsy was performed to test for bacteria. This was found to be negative. The specialist then ordered blood tests.
“At the age of 48, I was diagnosed with Type 1 Congenital Plasminogen Deficiency!”
The results of Renae’s blood test showed that her plasminogen antigen and activity levels were exceedingly low, and she was highly deficient in this important blood protein. Renae was finally diagnosed with Type 1 Plasminogen Deficiency at the age of 48 years.
- Renae’s Plasminogen antigen level: 1.3 mg/dl (normal levels are between 6-25 mg/dl)
- Renae’s Plasminogen activity level: less than 10% (normal levels are between 70-130%)
Renae felt relieved as she was finally able to make sense of the previous health issues and the numerous episodes of post-surgical complications and abnormal healing rates.
In order to manage the current case of ligneous lesions on Renae’s eye lids, the Ophthalmologist prescribed several different eye drops and steroids. After consistent treatment for 2 months, her symptoms improved.
“I met so many specialists during my adventure … it was very difficult not to know.”
Throughout her journey, Renae met with more then 10 different types of specialists, including an internist, orthopedist, oral surgeon, dentist, several ophthalmologists, gynecologist, neurologist and hematologist.Most of these healthcare providers were unaware of Plasminogen Deficiency and unable to offer concrete answers.
One of the most difficult challenges for Renae, on this very long journey, was her fear of going to the doctor when something was wrong. She was constantly afraid that another surgery might be required, and this would invariably lead to a long, slow and difficult healing process. It seemed that she always had complications with healing. The fear of the unexpected, and eternal health issues without explanation and adequate answers can be overwhelming.
Renae is now well aware of her condition and ready to embrace the future with her family by her side.
“I’m a fighter who takes one day at a time. I always tell myself, you have no choice, you’ve got to deal with it. It is what it is. It’s not fun, but it could be much worse.”